(62) Lessons learned from the experience of patients and parents of the adaptations in cystic fibrosis care during COVID-19 pandemic in France

Background: The ExPaParM collaborative research aims to explore the experience of patients and parents regarding their care and life pathway [1]. Interviews with patients and parents took place during COVID-19 pandemic, from March 2020 to March 2021. The objective of the ExPaParM-COVID study is to understand the influence of the health crisis on care pathway, health and life of patients and their families as well as to identify the lessons learned from this experience to support the improvement of care.

Methods: The participants were recruited by the partner centers in mainland France and Réunion Island to represent a wide variety of health and life situations along the CF pathway from neonatal screening to post-transplant care. Semi-structured interviews were conducted and verbatims analyzed using the grounded theory approach. Coding was performed in NVivo® for the adult, transplant adult, adolescent and parent of children populations. Coding plans were analyzed to identify similarities and specificities leading to categories with rich definition. Results were presented to center teams and discussed to identify initiatives that have been positive from a patient and parent perspective.

Results: Eleven partner centers recruited 66 participants: 23 adults, 12 transplant adults, 5 adolescents ( >15 years old) and 26 parents of children < 15 years old. One transplant child (and their CF transplant sibling), 4 adults and 4 transplanted adults were diagnosed COVID+ in our sample. The analysis shows various adaptations in the areas of organization of care and routine examinations (including the use of teleconsultations), hospitalizations, outpatient and home care and information given to families; changes in activities of daily living related to work, school or college, physical exercise; reinforcement of precautions taken against contamination to which they have long been educated; the psychological impact during the successive phases of the crisis; difficulties in diagnosing and treating COVID-19. The introduction of modulators was generally maintained during the pandemic. With the exception of transplant patients, patients with cystic fibrosis were not considered priorities for vaccination in France during the study period

Conclusions: The patients and parents stressed that the organization of the CF centers allowed the continuity of their care, despite the upheavals in the organization of hospitals during the COVID period which they faced when they had to be hospitalized. The local pharmacies ensured the continuous supply of CF treatments and prioritized their needs for masks when available. Changes in care management have been observed across centers and in out-of-hospital care. The strengthening of measures against the risk of cross-contamination in hospitals was unanimously and positively underlined. Teleconsultations coupled with measuring devices at home, educational sessions or discussions with a psychologist by videoconference have been evaluated from the point of view of patients and parents as new opportunities to be considered by the teams and offered to patients according to criteria to be defined

Acknowledgements: This work was supported by a grant from the French Foundation Maladies Rares

References: [1] Pougheon Bertrand D et al. Collaborative research protocol to define patient‑reported experience measures of the cystic fibrosis care pathway in France: the ExPaParM study. Orphanet Journal of Rare Diseases. 2022;17:73-87. https://doi.org/10.1186/s13023-022-02204-0